METHODS: Cross-sectional study of all CWE aged 8-18years old with at least 6months' duration of epilepsy, minimum reading level of primary school education Year 1, and attending mainstream education. Quality of life was measured using the parent-proxy and child self-report of Quality of Life Measurement for Children with Epilepsy (CHEQOL-25) questionnaire. Total and subscale CHEQOL-25 scores were obtained. The levels of parent-child agreement were determined using intraclass correlation coefficients (ICC). Family functioning was assessed using the General functioning subscale (GF-12).
RESULTS: A total of 115 CWE and their parents participated in the study. In general, Malaysian parents rated children's total CHEQOL-25 scores poorer than the children themselves [mean total parent score: 68.56 (SD: 10.86); mean total child score: 71.82 (SD: 9.55)]. Agreement between child and parent on the CHEQOL-25 was poor to moderate (ICC ranged from 0.31-0.54), with greatest discordance in the epilepsy secrecy domain (ICC=0.31, p=0.026). Parent and child were more likely to agree on more external domains: intrapersonal/social (ICC=0.54, p<0.001) and interpersonal/emotional (ICC=0.50, p<0.001). Malay ethnicity, focal seizure and high seizure frequency (≥1 seizure per month) were associated with lower CHEQOL-25 scores. There was a significant but weak correlation between GF-12 and parent-proxy CHEQOL-25 Total Scores (r=-0.186, p=0.046).
CONCLUSION: Our results emphasize the importance to have the child's perspective of their QOL as the level of agreement between the parent and child reported scores were poor to moderate. Malaysian CWE of Malay ethnicity, those with focal seizures or high seizure frequency are at risk of poorer QOL.
OBJECTIVES: To evaluate the effectiveness of a Home-Initiated-Programme-to-Prepare-for-Operation (HIPPO) on emotional manifestation and anxiety in children undergoing surgery.
DESIGN, SETTING AND PATIENTS: One hundred and thirty children were randomly assigned to either control or intervention group between February 2018 and April 2019 in a tertiary paediatric hospital in Singapore.
INTERVENTION: In addition to our standard pre-operative workflow, the intervention group received an additional home preparation kit consisting of an animated video on preoperative preparation and age-specific preoperative preparation activity sheets.
MAIN OUTCOME MEASURES: The primary outcome was the Children's Emotional Manifestation Scale score to evaluate behaviour and emotion in the children before and during induction of anaesthesia. Secondary outcomes evaluated anxiety levels in parents and children, the child's behaviour and degree of co-operation using the State-Trait Anxiety Inventory scores, State-Trait Anxiety Inventory Children scores, the Induction Compliance Checklist scores, the Visual Analogue Scale scores for anxiety and the feedback questionnaire.
RESULTS: The difference between the Children's Emotional Manifestation Scale score in control and intervention groups was not statistically significant. A promising difference was however observed in one of the secondary outcomes where the state-State-Trait Anxiety Inventory Children scores of 7 to 10-year olds in the intervention group almost reached significance; P = 0.067.
CONCLUSION: Despite being a child-friendly, easily accessible and affordable tool for patient education, HIPPO did not reduce anxiety experienced by children in the pre-operative waiting area or during induction of anaesthesia.
TRIAL REGISTRATION: ClinicalTrials.gov, identifier: NCT04271553.
MATERIALS AND METHODS: After obtaining consent from the parents and screening the children against the inclusion cum exclusion criteria, 90 school children whose mandibular first molars were caries free and with a well-defined pit and fissure system were recruited for this spilt mouth trial. The respective molars were allocated either to the ART sealant or the embrace group after the randomization process. The sealants were applied according to the manufacturer's instructions and followed up at the end of 3rd, 6th, and 12th month, respectively. The outcome measures assessed were the retention and the caries preventive effects of the materials.
RESULTS: At the end of the 6th month, about one-fourth of the sealants in either group remained totally intact, without evidence of caries. No significant differences were seen between the sealants either in terms of retention or caries preventive benefits at the end of 12 months.
STATISTICAL ANALYSIS: The chi-squared test was used to check differences in proportions. The significance value was set at <0.05. Kappa test was performed to assess the intraexaminer reproducibility with respect to retention and caries status.
CONCLUSION: The moisture-tolerant resin sealant could not replicate the physical properties usually associated with conventional resin sealants. The usage of ART sealants was deemed to be less cumbersome in an outreach setting as observed in this trial.
METHODS: A mixed method was used to collect data on parents' perceptions of ECCE policies in selected states in Malaysia. The questionnaires, (P1/POL) from the research project "Development of a Comprehensive and Integrated Model of Quality Malaysian ECCE", were distributed among 629 respondents who have a child in a preschool, and 22 participants were randomly selected to take part in five focus group interviews Results: The key findings of the study revealed 68% parents were not familiar with ECCE Malaysian government policy, however 84.3% stressed it is important for the government to educate them about ECCE. Thus findings indicated that the majority of parents lack awareness of the ECCE policies and quality of early childhood care and education programs related to the policies remain the issue. While interviewing the focus group ,most of them were not aware of ECCE and pointed out parents are stressing children's academic learning in particular preschools.
CONCLUSIONS: It is concluded that parents' awareness regarding the ECCE program must be part of the policies and needs to improve. It is recommended that the government of Malaysia should supply more information on ECCE policies to parents and focus on policy implementation. Moreover, the quality of ECCE programs should be improved based on the parents' perceptions.
METHOD: This qualitative cross-sectional study utilised online open-ended, semi-structured focus group interviews to explore the perceptions and experiences of parents of children with Primary Immunodeficiency (PID). Participants were recruited through convenience sampling from the Malaysian Patient Organisation for Primary Immunodeficiencies (MyPOPI), a non-governmental organisation dedicated to providing support and raising awareness about PID. The study spanned from May 2023 to July 2023 and included participants from diverse regions of Malaysia who had undergone different diagnostic journeys in various hospitals.
RESULT: The focus group discussions yielded 11 sub-themes that highlighted the experiences, understanding and challenges of the participants regarding genetic testing based on the semi-structured questions. These sub-themes were then grouped into four main themes that are awareness and understanding of genetic testing, the journey towards diagnosis and treatment, emotional impact and psychological factors, and the importance of medical experts in diagnosing and managing PID, as well as public perception and awareness.
CONCLUSION: In conclusion, this study highlights the diverse knowledge, awareness, and perception surrounding genetic testing for PID. Factors such as access to services, family history, and personal circumstances shape individuals' understanding of genetic testing. The importance of healthcare professionals, along with the need for improved accessibility and targeted communication strategies, is underscored to enhance understanding and reduce stigma surrounding genetic testing for rare diseases like PID.
Methods: The study involved seven adolescents with moderate to severe CHD/CRHD, six parents, and four health care providers in Institute Jantung Negara (National Heart Institute). Participants were invited for a semi-structured interview. Qualitative data were analyzed through the Atlas.ti 7 program using triangulation methods.
Results/conclusions: We identified five themes concerning the experience and challenges of adolescents relating to: (1) emotional/psychological issues; (2) the progress of the illness; (3) relationship issues; (4) future preparation; and, (5) school and community. These themes were identified together with eleven subcategories. The staff expressed support for the development of the Adolescent Transition Psychoeducational Program and adolescents with CHD/CRHD and their parents were willing to participate in the program if their schedule allowed. Their suggestions to improve the program were classified into six categories, with two main themes, (1) the self-management of illness in life and the future; and, (2) social support. In conclusion, the findings from the situation analysis act as a basis for a conceptual framework that will contribute to the development of an Adolescent Transition Psychoeducational Program that aims to empower adolescents with CHD/CRHD, enabling them to manage challenges during the transition phase between childhood and adulthood.
METHOD: A predictive, cross-sectional, multi-country online questionnaire was administered with a convenience sample of 6,073 parents (Australia, 2,734; Iran, 2,447; China, 523; Turkey, 369). Participants completed the Parent Attitude About Child Vaccines (PACV), the Child Vulnerability Scale (CVS), a Financial Well-being (FWB) measure, and Parental Vaccine Hesitancy (PVH) questionnaire.
RESULTS: The current study revealed that perceived financial well-being had significant and negative associations with parents' attitudes toward COVID-19 vaccines and child vulnerability among the Australian sample. Contrary to the Australian findings, results from Chinese participants indicated that financial well-being had significant and positive predictive effects on parent attitudes toward vaccines, child vulnerability, and parental vaccine hesitancy. The results of the Iranian sample revealed that parents' attitudes toward vaccines and child vulnerability significantly and negatively predicted parental vaccine hesitancy.
CONCLUSION: The current study revealed that a parents' perceived financial well-being had a significant and negative relationship with parental attitudes about vaccines and child vulnerability; however, it did not significantly predict parental vaccine hesitancy among Turkish parents as it did for parents in Australia, Iran, and China. Findings of the study have policy implications for how certain countries may tailor their vaccine-related health messages to parents with low financial wellbeing and parents with vulnerable children.